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10-31-2011, 10:03 AM #1New Member
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My body uses up my Testosterone injections too rapidly, looking for help
As a little back story:
I'm 31, 3 years ago I was diagnosed with 2 pituitary tumors (at least one of which is a Prolactinoma), hypogonadism, painful gynecomastia and hypercholesterolemia. Here are my initial blood work labs:
Testost FR+WB - 6.0 ng/dl (40-250)
Testost Free - 0.4 pg/ml (8.7-25.1)
Estradiol - 126 pg/ml (0-52)
Prolactin - 61 ng/ml (4.0-15.2)
Chol - 333 MG/DL
LDL - 269 MG/DL
HDL - 43 MG/DL
TRIG - 107 MG/DL
My first treating physician put me on 400mg/month Testosterone Depot injections and I felt beyond terrible. Switch to an Endo that put me on 100mg/week. Over the course of the last year, though blood testing my endo has found out that my body's testosterone metabolism is extremely high through unknown pathways. My labwork taken after my injection day shows what it should be expected from the injection dosage, then my labwork on the day I get my next injection (right before it) is very unexpectedly lower.
Currently I am on (per my doctor as determined by my labwork):
400mg/WEEK of Test Cyp Depot
50mg/day of Aromasin
0.5mg/2x week of Dostinex
20mg/day of Zocor
My end of week labs before my next injection look like this (Normal):
Testost FR+WB - 81.2 ng/dl (40-250)
Testost Free - 12.2 pg/ml (8.7-25.1)
Estradiol - 96 pg/ml (0-52)
Prolactin - 0.6 ng/ml (4.0-15.2)
Originally my endo thought I may have a absorption problem at the depot injection site but my post injection labwork confirmed that my testosterone metabolism is just very high, either through the aromatase pathway or other.
Post injection (next day labwork):
Testost FR+WB - 392 ng/dl (40-250)
Testost Free - 75.4 pg/ml (8.7-25.1)
Estradiol - 167 pg/ml (0-52)
Prolactin - 1.2 ng/ml (4.0-15.2)
I am still having very bad gynecomastia pain in both sides and issues losing weight, I had gyno removal surgery last November, but it has already begun to grow back. Also I am worried about the long term affects of having supra-physiological testosterone levels on a consistent basis for a few days after each injection. Does anyone have any advice or experience on this issue. I would like some help because this coaster ride sucks.
Thanks
Xen
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10-31-2011, 12:08 PM #2HRT
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Hi xenmaster and welcome to the club.
Interesting history and sorry for what your going through.
My initial thoughts are that you MUST get your Estradiol under control as soon as possible. Almost everything you are experiencing can be related to this elevated serum level. Consider that the ideal range for men is 22 - 29 pg/ml and your last labs have you at 167 pg/ml.
400 mg of Test is an extraordinary amount to take on an ongoing basis and you have every right to be concerned.
You need to understand the mechanisms of the Aromatization process. Consider that the male body converts exogenous testosterone into estrogen (E2) to try and keep a balance between male and female hormone in the body. All men have natural amounts of the female hormones like estrogen and progesterone. What we don't have natural amounts of is hundreds of milligrams of testosterone floating around...like 400 mg a week in your case!
The average guy produces about 7mg per day. That is Just under (49) fifty milligrams per week. The weakest injectable testosterone you can find is fifty milligrams a week in a TRT protocol (but even that us usually supplemented with hCG to increase natural production). So what do you think happens when you dump four hundred milligrams of test into your body each week...yup, estrogen goes up.
It has to, the body likes balance and narrow ranges.
Your body produces an enzyme called Aromatase that converts test into estrogen as its primary function. The more aromatase you have in your body, the more test to estrogen conversion you will have as well. How do you know if you genetically have high aromatase levels? You don't. You can't. Not until its a little late anyway.
Every symptom you have points to high aromatization of Testosterone to Estrogen. Gyno, water retention, feeling bad...the neg side go on. Also, if high Estrogen levels are maintained for long period of times there are very bad outcomes like Cancer, Hypothyroidism and Cardiovasculare disease.
It's also why your Testosterone levels are dropping so quickly.
Get your E2 in order and go from there.
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10-31-2011, 12:21 PM #3New Member
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Thanks for your info. I realize that my estradiol is high but its been almost uncontrollable. My endo has tried all three aromatase inhibitors at various doses and we stuck with aromasin , only one to actually increase my free testosterone levels, besides lowering my estradiol levels. We even tried a dose of 100mg a day of Aromasin and the results were almost the same as 50mg. All 3 AIs had little results on my test levels at any dosages (Aromasin a little affect on the Free). My doc just had me tested for a "estrogen producing tumor" but that came back negative. He mentioned something about "Excessive Aromatase Activity Syndrome", I but I really can't find a lot of definitive info on it. I feel depressed and stuck in a hole and I'm not sure where to go. I see a trio of Endo's that work together trying to solve my issues. They are even running a clinical study of my case because they say "I'm very unique". I've learned most of the time with health issues, being unique sucks. Would tamoxifen maybe help reducing some of the E2 sides I am experiencing? Geez, I'm taking so many things already I hate to throw more into the mix.
Thanks again,
Xen
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10-31-2011, 12:46 PM #4
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10-31-2011, 12:58 PM #5HRT
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Xen - I wished you would have added this information in your original post; so thanks for the additional information.
So, WOW! I've never heard of "Excessive Aromatase Activity Syndrome", but we're all different and things like this, while widely rare, can happen.
A malignant tumor producing estrogen I think of time to time as well here, but it's never appeared on these boards from my time here.
I don't know what more to add other then PLEASE PLEASE keep us updated on your study and outcome. It's how we learn here and I for one want to know much more about your situation.
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10-31-2011, 01:01 PM #6New Member
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Thanks bass and GDevine, any help is much appreciated. One of my docs actually referred me to this site for support issues. My 3 endos are at a complete loss. They are presenting my case study at a conference they are attending to see if anyone has any ideas on what to try. Being on 400mg/week of Test on slightly increases my estradiol levels from my baseline. I just don't know what to do. I've been to see about 8 doctors in this time period, some out of state specialist and such, and choose the trio of endos at their practice, they are regarded as the best in the area. But even they feel this is beyond there scope. I've read the sticky's in this section and a lot of threads in this forum and I know there is tons of good info on this site. Just looking to see if anyone is like me I guess. Thanks again for the welcome.
Xen
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10-31-2011, 01:07 PM #7
i wonder if Dr. John Crisler can help! GDevine?
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10-31-2011, 01:12 PM #8HRT
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10-31-2011, 01:30 PM #9
X3, jeez!
You on a submarine GD!
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10-31-2011, 01:32 PM #10HRT
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10-31-2011, 02:13 PM #11New Member
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Some additional info, sorry guys, i'm trying to get it all out there but more things keep popping in my head.
I've been on this current treatment for almost 15 weeks, with no change in body composition. With seems odd to me from what I've read on this site, 400mg/week would be a prettty good blast cycle. I've also been tested for a rare autoimmune condition where your immune system attacks your testosterone in your body, results where negative. Also tested my urine for excretion and its a little high but not excessive. I dunno, but just posting this makes feel a little better.
Thanks,
Xen
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10-31-2011, 02:19 PM #12
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10-31-2011, 03:00 PM #13Knowledgeable Member
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Was one of them letrozole ? It's probably the most powerful of the current generation ones but has a long half-life and would typically need a month or even two to reach steady-state levels in your blood.
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10-31-2011, 07:07 PM #14
Letro would be nuking it for sure. Lets hope GD gets a good response as these issues are kinda disturbing.....
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11-01-2011, 02:01 AM #15
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11-01-2011, 09:02 AM #16New Member
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Letrozole was one of the aromatase inhibitors I was put on to try (was on it serveral months). But the results from my labwork in regards to estradiol was insignificate. It did lower it slightly more after 3 months time frame then Aromasin , but my endo said it wasn't significate enough to determine that it wasn't just normal variation in my serum levels. That coupled with the fact that it made my already bad lipid panel even worse, we switched back to Aromasin. I'll give a list of stuff I've been on in the last 3 years.
Testosterone Cyp. (100mg - 400mg/week)
Clomid (50mg - 150mg/day)
Dostinex (1mg/week)
Anastrozole (1mg - 5mg/day)
Letrozole (2.5mg - 5mg/day)
Aromasin (25mg - 100mg/day)
Simvastatin (20mg - 40mg/day)
All my labs except the ones I've mentioned were normal (DHEA included) except my IGF-1 was low, most likely because of my pituitary tumors, but we haven't dicusssed a treatment for that yet.
Thanks,
Xen
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11-01-2011, 09:53 AM #17New Member
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----
Last edited by xenmaster; 11-01-2011 at 12:31 PM.
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11-01-2011, 06:20 PM #18Associate Member
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xen,My script is for 600 mg or 3 cc a week. I have the same problem. I only covert a small portion of it to free test.Most people think im crazy when I tell them what I take per week. My doc is stumped as well.Even had me come to the office for injections cause he thought I was running a game on him. Ive been thru every test ,mri,cat scan,scope that you can do. Blood work out the ass. Ive been on trt for 7-8 years and they still dont know. Let me know if you find a cause because they just shake their head at me when I go in to the office now. I do have adex but rarely take it cause I dont need it. I go thru a 10 ml bottle every 3 weeks and im 6'2" 235lbs and 48 years old. With the type of work I do and the gym I should be huge but I dont get that benefit from it. It did screw my lipids and Im on crestor and BP meds too since I started. I understand you frustration.
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11-01-2011, 06:45 PM #19Junior Member
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On 300mg/wk with high e in control with AI.... test level is around 259 last checked....been baffled by tis also my Dr just blows it off....keep us posted please
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11-01-2011, 06:53 PM #20Knowledgeable Member
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For both you bros - you know it's a two part process: one, the absorption from the oil, and second, the metabolism of free testosterone . Did either one of you have any studies done to see how you process free testosterone (an IV injection of testosterone or at least use of a rapid absorber like test-prop)?
A real puzzle???Last edited by ecdysone; 11-01-2011 at 06:55 PM.
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11-01-2011, 07:10 PM #21Junior Member
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11-01-2011, 07:33 PM #22
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11-01-2011, 08:27 PM #23New Member
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My endo checked my absorption thru post injection serum levels and its on the what low end of what would generally be expected. As for clearence, endo checked for metabolites and was slightly above normal but no where close to what it should be for the dosage I'm on. I too was accused by a previous Dr of padding my bloodwork. She had me bring in a sealed unopened vial and did the injection herself then had me come back to her office the day of my next injection so she could witness my blood draw. Now its right there in my chart she did that. Shutup the insurance company and all the Docs that came after.
My DHT is normal and even my PSA is almost unmeasurable. No clue, I have a appt in the AM with my endo's office, I go once, sometimes twice a week. They're worry my symptoms may be a sign of a more serious condition everyone is missing so they try and stay on top of everything as often as they can. Needless to say, I've already met my insurance deductable for the year.
Xen
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11-02-2011, 12:16 AM #24
Have any of you guys used gels? Just thinking about absorption rate.
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11-02-2011, 01:42 AM #25New Member
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Tried Testim and Androgel , both at maximum dosages, but almost had no affect on my serum levels and both gave me terrible rashes. Back then, docs thought I had an aborption issue mostly because of the rashes so it wasn't pursued past a few weeks (reason it slipped my mind earlier I guess), but now its pretty well speculated by all those that treat me now, that my body, metabolizes, or somehow destroys my serum testosterone by an yet unknown pathway (they know all the pathways test is removed or converted from the body but can't figure out which is working so excessively rapid in me). Latest shot in the dark is "Aromatase Syndrome". Had a bunch of studies done on me over the last two weeks, should get those results back tomorrow. I don't fit some of the parameters coupled with my pituitary disease, make it a far fetch.
Xen
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11-02-2011, 08:16 AM #26HRT
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11-02-2011, 09:09 AM #27New Member
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Ok so I got some pretty disturbing news at the doctor. I just got to my office and wrote this on my iphone waiting for and on the ferry, so bare with any typos... So since my endo group has long tried to fit my symptoms in the diagnosis of “Excessive Aromatase Activity Syndrome” for some time now. But there really isn't a test for it. As of now (what they tell me) its mostly diagnosis by exclusion of other disorders using bloodwork to back it up. Standard things to look for are
Obese
Female body characteristics
Massive gynecomastia formation
Low testosterone (when not on TRT) and high estradiol serum levels
And anything else you would expect to find with high estrogen levels
Sterility
Well I don't really fit that profile to a “T”. Yes I have low testosterone when not on TRT, but the estradiol levels they were talking about were like 500-600+ pg/ml of estradiol (I'm currently between ~100-170). And I do have gynecomastia but its not massive by any means and was more glandular with a small amount of fat. The only reason I had the mastectomy was because of the terrible pain I was in. I'm also do not have the female body characteristics, other then the small gynecomastia, which is only visible with my shirt off. And yes, in my medical history “obese” is checked off. But I'm 5'9” and 223lbs at 26% bodyfat, I wear a size 36 pants and large shirts. So in terms of BMI, yes they consider me obese, but my doc said like “400lbs obese” is what they are talking about. Also I have children.
So today I got a temporary diagnosis: Excessive Aromatase Activity Syndrome
I was stumped too, because my endo just spent 10 minutes explaining to me all of the above and how I do not “fit the bill” for it. Well this is what came next.
My doctors tested my urine for excretion of a hormone called Estriol, something I have never heard of, but it is part of the family of estrogens from what they explained to me. But the real kicker is that its usually only found significant amounts in pregnant women and my urine excretion was 4.5 times that of a healthy pregnant women. They had previously tested my excretion for testosterone and estradiol which was only marginally elevated.
So here is the conclusion that lead them to my diagnosis:
I get injected high doses of testosterone which my body almost instantly converts via extremely excessive aromatase to excessive amounts of estradiol. My body converts (by unknown means, right now a rare tumor is suspected) it into estriol rather quickly since this process isn't as dramatic as testosterone to estradiol, and since this form of estrogen isn't nearly as potent or bioactive as estradiol, it's high amounts do not have the same affect as high E2 (its mostly my E2 causing my symptoms they suspect). Then my liver works in hyperdrive (live panel is elevated but was thought to be because of the Zocor) to excrete it. It matches of all of my symptoms and labwork to date as my endo put it. They think I have a very rare tumor that mimics placenta cells somewhere in my body and scheduled several MRI to determine its location, probably will have a large blood supply so they are confident they can find it if it even exists. Here comes the bad news. You cannot really treat high end Excessive Aromatase Activity Syndrome. The amount of AI needed to control it would be extremely toxin and most likely fatal. I am being taken off the testosterone and they will need to see if my liver panel returns to normal. My endo is going to give me try me on Dihydrotestosterone Hexadentate injections to continue to suppress my HTPA system and prevent my body from making any testosterone, but at the same time, “prevent me from turning into women” as my endo put it. The DHT injections should also halt my gynecomastia development, and could possibly reverse some of it according to a study he gave me. And I know what you are thinking, because it was the first thing out of my mouth, “PROSTATE?”. According to my doctor, some DHT in manufactured in the prostate thru the presence of 5alph-reductase within the gland itself by uptaking testosterone from the bloodstream (testosterone is meant to pass easily into the gland). DHT itself doesn't readily permeate the gland from the bloodstream, it only usually only exits. My endo showed me several ongoing studies, mostly from France, where they are evaluating DHT as an alternative to TRT. One study is a long term one and none of the men involved have any prostate issue and even some men have had a reduction of their BPH. So if this works and my estrogen levels drop, and my symptoms subside, then they can conclusively diagnose me with, Excessive Aromatase Activity Syndrome, with secondary conversion to Estriol. But they haven't told me about my long term treatment options, because, frankly I don't think they know at this point.
Sorry if this is really long winded. I typed a lot of it from the 18-page printout my endo group gave me this morning outlining the diagnosis, treatment and supporting literature. Wish me luck and thanks for everyone's support.....
Xen
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11-02-2011, 09:29 AM #28Associate Member
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Wow... What more can you say. Please keep us up to date on your prognosis. Wishing you the best outcome!
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11-02-2011, 11:52 AM #29
hang in there Xen, one step at a time. we'll be following this thread so please keep us posted.
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11-02-2011, 06:37 PM #30Associate Member
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Im going to print and take this to my next appt. Bass- no prostrate issues at all and I do blood every 8 weeks cause insurance wont pay any more frequent. I kinda stay about 400 -500mg week is my dialed in point.The best I ever feel is when I give blood for about 3-5 days after then back to survival mode.Dr just did the colon camera deal,scope down the mouth just looking for adverse effects from the high usage.Came back that they took out 7 polyops non cancer and some other thing that I cant spell or say that I have to watch at my age......Its been frustrating but now I will let him read xens writings and keep my fingers crossed.
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11-10-2011, 12:30 PM #31New Member
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New Update
Been almost a week since my first DHT injection (injections burn like fire) and as expected not much change in my overall symptoms but my erection quality has drastically improved, not trying to brag or anything, but for the first time in a long time, I have a positive going for me. Well I'll describe it like this: you know those motivational shows where the guy breaks 10 blocks at a time with his fist kung fu style? Well I feel like I can do that, but not with my fist.....lol.
Endo told me that it'll take a month for so for the testosterone to clear my system enough to see if my estrogen levels drop. If they do, then he'll stick with this diagnosis and try and come up with a game plan for a treatment. Thanks again for the support.
Fingers crossed,
Xen
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11-10-2011, 12:34 PM #32
one step forward! thanks for the update! LOL, cock fu !
Last edited by bass; 11-10-2011 at 12:54 PM.
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11-10-2011, 01:20 PM #33HRT
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Good news Xen.
Always wanted to test DHT; maybe this month for my annual BW. I heard great things when it's added in. BTW, you don't need to inject DHT it can be introduced transdermal as well. Might want to look into that next time.
Thanks for the update friend and pleaes keep us posted on progress in this thread.
gd
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11-17-2011, 10:57 AM #34New Member
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I know this really isn't pertinent to the topic of the thread but its goes with my whole experience I guess. Saw my plastic surgeon for my one year followup for my gynecomastia removal surgery. Super depressing. I knew a lot of it had grown back but seeing my pictures from one month post-op really makes it hit home for me. From the pain I'm experiencing and the amount of tissue that has grown back he wants to perform another surgery to remove it. It's gonna be a pain in the butt to get my insurance to pay for the surgery again, I just know its gonna be. Plus not to mention having to get another mastectomy is not anything close to a picnic.
thanks everyone for listening,
Xen
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12-15-2011, 01:46 PM #35New Member
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Diagnostic treatment is progressing as planned. Yesterday my testosterone , estradiol and estriol serums levels were almost undetectable on my labwork results. DHT levels are off the charts at 405 ng/dl (30-85 ng/dl range). But endo says this is to be expected. It would appear that my docs were correct in my diagnosis. But the DHT injections are not a long term treatment option. The only real issues I have with it are the painful injections twice a week and the vicious acne on my back and chest. Other then that I feel great. I've lost about 10lbs or so just sticking to my regular workout program, strength is way up, and me sex drive is through the roof. All MRI and other test to find any tumors have not be successful. Now my docs think I may just have a genetic abnormality causing this and has ordered some genetic tests which I get done in a few more days. Docs told me that I can stay on DHT only injections for up to 12 weeks as long as my bone density doesn't drop and I can stand the treatments while they try and find a more long term treatment option.
Xen
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12-15-2011, 02:20 PM #36Knowledgeable Member
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405 ng/dL DHT levels aren't really all that high, I bet you could easily get the same with a transdermal cream, and for the bone density issue, you could also administer a small amount of estrogen cream.
I wonder what the effect of couple thousand IU/week of HCG would do in your case? Could also help a bit with the bone density.
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